Lessons and love from Alzheimer's World

Lesson #12: The Dating Game

I’ve been dating an odd assortment of women for the past two years. My single friends are busy tweaking their eHarmony profiles and complaining about how hard it is to shop for lovers. I can relate; I’m looking for that perfect match, too. But the only partner I’m interested in these days is a caregiving partner. And finding that match has proven to be challenging.

When we first started looking at professional caregivers, I was told by one of my friends to adjust my expectations. “Don’t expect to find someone like you,” she cautioned. Well, obviously no caregiver is going to be as emotionally invested as a daughter; I understand that. And possibly no one with my managerial experience would end up in a professional caregiving role; OK, I get that. And because I am a medical writer, I shouldn’t expect them to have the same know-it-all brain that I have; yeah, understood.

So how hard can it be to find that perfect caregiving partner?Harder than I thought, hence all the dating. This may be because of our situation (both parents afflicted, French-speaking father, English-speaking mother, limited budget, suburban location), but I don’t think so. I think there is a current shortage of trained professional caregivers available to newcomers, and it’s only going to get worse, given the projected numbers for North America alone. We need more good people to step up to the job. And we need to pay them fairly, because (like so many of the social professions), caregivers are generally underpaid.

The dating game was what you’d expect.
Let me preface this fast-forward summary by saying that I genuinely admire any person who chooses to do caregiving, for whatever reason. They are all angels, as far as I’m concerned. It’s not an easy job! It’s more often women than men, some are doing it because it is a “calling”, some are just trying to pay the rent and put food on the table, some have gone through the experience with a family member and want to turn it into a career. They all love people and genuinely want to help.

The first caregiver we “dated” was a companion-type helper, who had a matronly air and a firm approach. She was a take-charge type, incredibly efficient and yet always calm. I quite admired her, and both parents liked her. She met a short-term need while I was selling my home and relocating, but then moved on when I stepped into the role. At the time, my parents were still quite independent. My mother was still driving and attending her women’s group meetings. Dad was going to the gym twice a week. Oh, the good old days!

The second caregiver was misrepresented; we were told that she had expertise in dementia behaviour and deft cooking skills. As it turned out, she had neither. She was a big-hearted woman who was aging herself, and just looking to help others and stay employed for a while longer. She was suffering from arthritis and had to sit a lot. Ultimately, we didn’t think she had the stamina and energy that the job would require of her sooner rather than later. My parents reacted neither favorably nor negatively; it just didn’t feel like a good match after a few weeks.

The third caregiver was bold and brash. We knew her life story within half a day, and we felt bad for her; she had survived some tough challenges. It was an ongoing drama, with a delinquent boyfriend in the picture. My parents didn’t quite know what to make of her, but she made them laugh and seemed capable enough. After a short stint, though, it became obvious that she was a little too needy herself, possibly dealing with addiction, and probably not capable of focusing on our parents as much as we wanted. For one of my siblings, trust was an issue. I trust everyone, but my sister is more discriminating, so I trust her distrust.

The fourth caregiver was a sweetheart, and my mother took to her immediately. “It feels as if I’ve known her all my life,” Mom said, which gave me great hope. She was kind and gentle, and she even looked like an angel, with blonde hair and rosy cheeks. She wore a nurse’s uniform to look more professional, which I thought was endearing. And everyone got along really well, for about six months. Unfortunately, this shy, wonderful woman was not comfortable doing intimate duties, and was completely unprepared for (and possibly overwhelmed by) some of the more bizarre behaviours that can manifest with Alzheimer’s. She had no training in that area. We realized that as Mom’s needs grew and changed, she wouldn’t be able to tackle them. It was a mutual break-up.

Hope springs a kernel….
The fifth (and current) caregiver partner is, to quote my sister, a “knock off” of me, or at least there are a lot of parallels in our personalities. And yes, this woman reminds me of me. The one I’d given up on finding. Too funny! Of course, being a seasoned skeptic, I’m waiting for the other shoe to drop. But in the meantime, I’m awash with gratitude. We have found someone who appreciates the challenges inherent with dementia, embraces the benefits of meditation and healthy food, and who generates a positive energy that is a joy for my parents to be around. I don’t want to say more for fear of spoiling the magic, but thank you, V, for being you.

Lessons learned:
– Professional caregiving is a big and growing business, given the increased number of people affected by dementia. It is, no doubt, going to attract its fair share of entrepreneurs who want a piece of the pie. These people won’t necessarily have your loved one’s best interests at heart. I’ve been asking owners what inspired them to begin their business, and listening closely to their answers.
– Have someone in the family (or you) interview the caregiver before you introduce them to your loved one. Some of the businesses don’t suggest or encourage this, but it’s important to minimize the “overwhelm” that can occur when you start introducing new people to the mix. It just seems logical to screen them first, especially if you know who you’re looking for (and you should have some idea, if you’re hiring, what traits you’re seeking in a caregiver).
– Because every person with dementia is going to experience it differently, match-making them with the right caregiver is very much like dating; you shouldn’t settle for “good enough” any longer than necessary, and you should always be on the search for better and/or more, especially if you’re aiming for at-home around-the-clock care, as we are.
– Astonishingly, the skill most lacking among caregivers is some formal training in Alzheimer’s and/or dementia behaviour and management. Teepa Snow is an internationally-renowned educator and one of my heroes, along with social activist (and part-time trainer) Susan Macaulay, and Kate Swaffer, who reports from the front lines of her own journey through dementia (you have to read her “20 Things Not to Say…”). I encourage all caregivers (and business owners) to find a way to better understand what people with dementia and Alzheimer’s most struggle with, and how we can all help.

The only way we can ensure the BEST quality of life for people with Alzheimer’s and dementia is for their caregivers and all of society to truly understand what their challenges are, and how their lives and ours can be made more positive and enriching through compassionate care and unconditional love. Yes, folks, it takes a village.

“When you’re looking for someone, you’re looking for some aspect of yourself, even if you don’t know it….what we’re searching for is what we lack.”– Sam Shepard

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6 thoughts on “Lesson #12: The Dating Game”

You are absolutely right! Caregiving of an ALZHEIMERS patient requires unconditional love. And unfortunately we can’t expect to find that from a standard kind and compassionate person. There’s the intimate stuff you mention and, much much more challenging, there is the aggresive and violent behavior that comes at the later stages and that explodes all of a sudden for no reason. Hopefully, your parents may never reach that stage.
My darling gentle sweet mother has. It’s heartbreaking and we’d need to find a Mother Teresa type of saint to help – and that does not exist. I’ve asked how they cope with that in the dementia units and was told flatly that they drug them to the hilt for them to be calm and under control.
Good luck in your quest dear Lorrie.
Charlotte

I’m sorry to hear that your mother has reached that stage, Charlotte. And yes, they use (inappropriately) drugs to calm seniors in dementia units. Big hugs to you, hang in there! And thank you so much for your good wishes.

Re: “and, much much more challenging, there is the aggresive and violent behavior that comes at the later stages and that explodes all of a sudden for no reason.”

Rarely does anyone, including people who live with dementia, explode “all of a sudden for no reason.” There’s almost always an explanation. It’s just that sometimes the reason is harder to find because the person living with dementia is unable to articulate it in ways we can readily understand or we are not looking for the reason because we erroneously blame the behaviour on the disease.

Yes, you are right “they drug them to the hilt for them to be calm and under control,” because, to be blunt, the environments suck and actually provoke unwanted behaviour, the facilities don’t have enough staff and even if they do have enough staff they aren’t properly trained.